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Going blind after a lifetime of normal vision: The toll of macular degeneration

Many people don’t realize they could lose much of their eyesight as their body ages — the biggest risk factor is simply getting older.
Catherine Abegg Photography
/ Source: TODAY

Jimmy Abegg still remembers the time he almost brushed his teeth with hemorrhoid cream instead of toothpaste.

The musician, painter and photographer had recently been diagnosed with macular degeneration, a leading cause of vision loss in older Americans.

While touring with a band, he was staying at a friend’s house when he reached for what he thought was toothpaste in the medicine cabinet. Abegg’s eyes couldn’t tell the tube was filled with something much different, but as the substance hit his teeth, he knew within a “millisecond” he’d made a mistake.

“I thought it was just funny and made a note to self: I better be a little more careful,” Abegg, 67, who lives in Nashville, Tennessee, told TODAY.

“Now my wife gets toothpaste on the toothbrush for me and I’ve got a lot of help… I have just sort of been working on learning how to be blind.”

Many people don’t realize they could have normal vision all of their life only to lose much of their eyesight as their body ages — the biggest risk factor is simply getting older.

Almost 2 million Americans over 40 are affected by age-related macular degeneration, with 7 million more at substantial risk of developing the condition, according to the Centers for Disease Control and Prevention. It can prevent a person from reading, driving, seeing people’s faces, watching TV and browsing the internet. There's no treatment for the most common type of age-related macular degeneration.

'I see chaos'

Abegg didn’t have any vision problems until 2015, when he was about to turn 60. He’d been a practicing musician most of his life and discovered he also liked working as a photographer. As he looked at the photos he took after one particular session, all of them seemed to have a bump in the middle. Abegg thought there was something wrong with his camera.

“But I started noticing when I was driving that the same thing was going on. The stop signs would look curved. People would look curved. Trees would look curved,” he recalled.

Much to Abegg’s surprise, he was diagnosed with the dry form of age-related macular degeneration (more on the types of AMD later.) It affected his left eye first, so he relied on his “strong and good” right eye for the first couple of years. But now both eyes are severely impacted. There’s just “a little rim of peripheral vision” left in his left eye, Abegg noted. His right eye is gradually being destroyed as well. "I see chaos," he said.

He stopped driving because he couldn’t tell the difference between a person and a stop sign. He quit touring as a guitarist because he couldn’t see his pedalboard.

“I can’t see a stage. I can’t see a movie. I can’t read a book… my poor wife carries the burden of this far more than I do,” Abegg said. “I’ve had to say no to a lot of things… but I’m a reckless optimist.”

He still sees color and shape — crucial to his work as a painter. Abegg now paints with his hands rather than a brush and he’s been inspired by Sargy Mann, a British artist who kept painting after losing his sight.

“I think my painting is in some ways better now than it ever has been because I can’t really edit, I can’t see well enough to fix a mistake,” Abegg said.

“So what happens, happens and what I’ve discovered is that it’s mostly good.”

What is age-related macular degeneration?

It’s an eye disease that can blur or destroy a person’s central vision, according to the National Eye Institute.

If you think of the eye as a camera and the retina as the film, macular degeneration affects a very specific part of the retina called the macula, said Dr. Rahul Khurana, a spokesperson for the American Academy of Ophthalmology. That’s the part that controls sharp, straight-ahead vision.

“Anytime people go through any type of vision loss, it is very devastating,” Khurana, who is a retina specialist at Northern California Retina Vitreous Associates, told TODAY.

“For a lot of seniors who are now in their golden years — the time to enjoy the fruits of their labor in their retirement — losing their ability to read, to see things up close, look at the internet, watch TV, look at their loved ones, it is very debilitating.”

Patients with AMD still have peripheral vision so they’re not plunged into darkness, but their central vision will be blurry or contain blank spots.

Scientists are still trying to understand what causes the macula to deteriorate, but both genetic and environmental factors seem to be at play, according to the American Macular Degeneration Foundation.

Getting older and smoking are leading risk factors, Khurana said. Others include high blood pressure, eating a diet high in saturated fat, being overweight and having a family history of macular degeneration. Abegg's case seems to be genetic — his father and two brothers also have AMD, he said.

There are two types of age-related macular degeneration:

Dry, which accounts for about 80% of cases, Khurana noted. This is when the macula gets thinner over time as part of aging process.

Wet, which is the more severe form. It happens when abnormal blood vessels grow in the back of the eye and damage the macula. This can lead to rapid central vision loss. Any stage of dry AMD can turn into the wet form.

What are the symptoms?

Dry macular degeneration is gradual and usually doesn’t affect vision in its early stages, Khurana said. But after a couple of decades, people may suddenly start noticing problems.

“The process is occurring over a long period of time, but when it starts affecting the vision, it can feel very abrupt,” he noted. “That’s why it’s very important to get a dilated exam every year because there are certain things you can do to prevent the progression of macular degeneration if you catch it earlier.”

A big warning sign in the late stages of AMD is that straight lines start to look wavy or crooked. People may also notice a blurry area near the center of their vision. Regularly looking at the Amsler grid can alert you to problems.

What is the treatment?

The wet form of macular degeneration used to be “a one-way ticket to blindness,” but now patients can do very well if it’s caught early, Khurana said.

Treatment for the wet type includes drugs that are injected into the eye, and a combination of injections and laser treatment.

But there is no treatment for the late stages of dry AMD, forcing patients like Abegg to adjust to a new life.

Is there any way to prevent macular degeneration?

Don’t smoke and monitor your vision regularly by looking at the Amsler grid to catch any problems early.

A big worry with dry macular degeneration is that it will turn into the wet form, which can lead to rapid central vision loss. Taking a certain combination of vitamins, known as the AREDS and AREDS2 formulas, decreases the chances of that happening by 25%.

“We also think eating eye-healthy foods, such as dark leafy greens, kale and spinach; yellow fruits and vegetables; fish and a balanced nutrient-rich diet is shown to be helpful for people with macular degeneration,” Khurana said.

How do people who’ve permanently lost central vision adjust?

Magnifying glasses and better lighting can sometimes improve patients’ reading ability.

Low vision centers can help people discover technology and devices that can make the most of their remaining eyesight.

Abegg called both his iPhone and iPad “a lifesaver” because he can zoom in on the screen, dictate outgoing texts and emails, and have incoming messages read to him by the virtual assistant.

“For me, the macular degeneration — as awful as it is and as destructive as it is to a normal life — I looked at it as the beginning of a new chapter instead of the end of my great life,” he said.

“People need to know it’s not the end, it’s just the beginning of a different life.”